THE CHANGE OF PATIENTS' AWARENESS OF DISEASE PROGRESSION AND THE RELATION TO DECISION MAKING IN EARLY-STAGE DEMENTIA: THE QUALITATIVE ANALYSIS

Although the awareness of disease progression in early-stage dementia has been studied, few studies have investigated its relationship to decision-making. In this study, the change inpatient self-awareness of memoryloss and the ability of decision making regarding visits of memory clinic and use of long-term care services was investigated among early-stage dementia patients in our memory clinic. The subjects included 6 early-stage Alzheimer's patients who regularly visit the memory clinic (4 males and 2 females; mean age:75.5±7.6; mean MMSE: 23.2±3.6). Each subject was interviewed at their home and their narratives were qualitatively analyzed. Six categories were extracted; self-awareness of memory loss, the emotional affects, emotional changes before and after being diagnosed, motivation toward treatment, the family relationship, and their future plan. The occurrence of the categories was analyzed. Patients became aware of memory loss by their behaviors such as “forgetting promises,” “loss of short-term memory” and “repeating the same subject in conversation,” and also by the family members' observation. The awareness affected patients emotionally, causing loss of confidence, anxiety, irritation and anger. They felt resistance to admitting memory loss when being pointed out by others. The first visit to memory clinic was decided by patients, but mostly motivated by family members. Emotional affects decreased after the clinic visit with a sense of relief and depressed feeling lifted, by trust to the doctor, and knowledge of the disease. They became strongly aspired to slow dementia progression by compliance to the medication and engaging activities stimulating memory. All the subjects told “they would not need care service”, mentioning they were “physically sound” and such services were “irrelevant to them.” Visit to memory clinic and receiving a diagnosis seem to improve patients' recognition of their situation; i ncreased motivation to slow dementia progression and increased appreciation to the family. However, patients did not become aware of need for care services even after receiving diagnosis, suggesting patients need appropriate support to their decision-making process.